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09/05/2011 12:59 PM

Long-time CFS getting worse

Burgh
Posts: 4
New Member

I've had CFS and fibro for as long as I can remember. When I was little, I used to think everybody hurt all the time and just didn't complain about it. I'm in my early 60's and in the last 5 years the CFS is getting progressively worse. I take care of my grandchildren and many days when they leave, I fall into bed at 6 and don't get up until 7 the next morning. I am dragging myself through almost every day now. I've tried all the vitamins, diets, remedies, etc. over the years and nothing has helped but I didn't anticipate it getting worse. Is anyone else experiencing this? I just need a few friendly ears...I don't mention it to my family anymore because they just never have understood that there really is something wrong.

thanks for listening, Burgh

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09/05/2011 01:31 PM
Kvasconez
 
Posts: 966
Member
I'm an Advocate

Hi, Burgh (not short for Pittsburgh is it? Smile),

I am so very sorry you feel you are getting worse. I just came down with fibro at 50, with not even a year since my diagnosis and I cannot imagine my entire life living with this hanging over me. I am so sorry to hear your CFS is getting worse. Have you talked with your doctor about it? I understand about family not wanting to hear it. My husband is good about it most of the time, but there are times, like today, where he is an insensitive brute. These times I do wonder if he even believes me that I suffer at all or if I am just a drama queen. I feel badly that you cannot talk with them, but we certainly get it and understand. Sending soft hugs to you. Please keep us up to date on your progress.


09/05/2011 02:16 PM
r2d2c3po
r2d2c3poPosts: 44
Member

Are you on any prescription drugs and what is your drug history if you do not mind me asking...I was diagnosed with Fibro (a central nervous system disorder when what I really had was just a dependency to prescription drugs. I was resigned to find all the drugs I could that would help but nothing really worked. I decided to get off ALL GABA acting drugs and will eventually get off the low dose of prozac that I was prescribed. I am 50% better and no longer have severe CFS symptoms. Have you even been on benzodiazepines? Gabapentin or any other drugs? There is no scientific evidence of drug withdrawal/tolerance nor is there any for fibromyalgia. I am beggining to think that it is the drugs that cause symptoms to get worse.

Best regards, Robb


09/05/2011 04:01 PM
Burgh
Posts: 4
New Member

Kim, Yes, I'm from Pittsburgh Smile

Robb, nope, no drugs. I've tried things over the years but nothing made a difference. I'm glad for you that you found an answer.

Burgh


09/05/2011 05:16 PM
Kvasconez
 
Posts: 966
Member
I'm an Advocate

Me too! Actually, live in northern VA and work in DC, but raised in Pittsburgh near Moon Township and never truly left! My two girls are Steeler fans as well. Went to IUP undergrad and Pitt grad school. Are you seeing docs there? I don't know in this area, but the docs there saved my dad after a heart attack at 44 and my brother who had leukemia at 4, but was one of the country's first cured patients.

I admire you for going without meds. I think at times that other than the pain meds, nothing is doing anything. I would love to chat later about you and the Burgh! I miss it but stay connected through the sports! Hope you feel better and talk with you later!


09/06/2011 06:53 AM
Burgh
Posts: 4
New Member

I don't currently live in Pittsburgh, but it will always be home. I've had this for so long I've finally just "learned to live with it" since none of the drugs or alternative therapies did anything. Deep massage feels great, but doesn't last. One of the things that I've learned is that I just cannot overdo activities. I missed out on a lot of family activities when the kids were growing up, and really have to pace myself with the grands. I can't work 12+ hours at a time anymore, either. I used to work 7-8, go home and sleep and do it again the next day. Now I'm lucky if I can do a 4-5 hour stint before I have to rest. I don't go out to work anymore, but do have the grandkids 50 hours a week. I'm not on my feet the whole time, though and nap when they do. We have days when I can't do much and those are movie days. I try not to do that often.

Someone's yelling for me, I have to go. talk to you soon. Burgh


09/06/2011 08:29 AM
Lillipopz
Lillipopz  
Posts: 88
Member

Hey Burgh!

I get what you mean about thinking everyone just hurt and not complained about it!

I only realised it wasn't so when I asked someone, quite concerned, if what they were doing was really hurting, to which the replied 'No... why on Earth would it?'

Pretty confusing answer to me haha!

Hope you're having a relatively pain free day, Lilli


09/06/2011 11:04 PM
hedap
 
Posts: 2012
Senior Member

Hi Burgh,

My cfs hasn't escalated that much over the years. I've always been about the level you are at. I have to limit---cant' stand too long etc. The fibro pain has increased lots. Since perimenopause. Right now even with a narcotic, I am always in pain, but it waxes and wanes throughout the day. Am & PM seem to be the worst for me but then the fatigue is worse in the AM and afternoon. Go figure.

Hope tomorrow is a good day for you, hang in there my friend.

heather

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